Plagiocephaly

krwact

Hi all,

I know some of the moms here have dealt with this and I'm hoping to get some insight.  DS has definite moderate to severe plagiocephaly and our pedi has referred us to a specialist but they won't see him until early September.  Is this typical?  How old was your LO when first seen/treated?  Until then, I'm doing what I can to keep him off his head but it isn't easy.  He's a good sleeper and though I put a washcloth under one shoulder to encourage a lean during sleep, he wiggles and moves so much that it doesn't seem to make a difference.  He also hates tummy time with the burning white-hot passion of a thousand suns so while I do torture him some every day, he doesn't get enough.  I end up holding him most of his awake time with occasional bouts in his Bumbo.  Is there anything else I could be doing?

What's the path I'm likely looking at?  Is there any chance that moderate/severe plagio can be treated without a helmet?  If your LO was in a helmet, how long were they in it?  What was your experience like while they were in it?  

Thanks!

krwact

Thank you so much for this info!  It's reassuring to hear that you saw improvement doing most of the things I'm trying.  I am absolutely going to Google the Boppy Noggin Nest and Baby Moon pillow.  Haven't heard of those.

I keep telling myself that a helmet is temporary and is not the end of the world and in fact, I'm very lucky to have access to the care he may need but I also know that if he needs one, I will cry.

Thanks again for your post!

Junebug060609

DS had mild plag. No helmet, but about four months of PT. He also had torticollis, and once we addressed that the plag started to improve.

Honestly though, even if he needs a helmet it is just temporary.

Missa_g

How old is your DS? I'm on mobile and siggies don't show, sorry.

J had moderate to severe plagiocephaly and we chose to helmet (DOC band) when he was 8.5m actual, 6m adjusted. They typically wait until around 6m to helmet so the child has good neck control. It was seriously nbd aside from an appointment every two weeks to resize it. It didn't change his sleep, play, or eating at all. He wore it for just under 4 months and I am so so so happy with the results! I was scared to get their hair cut short because I was afraid I would notice flatness, but his head is just as round as S's now!

Does your DS have an underlying condition causing the plagiocephaly? If torticollis is involved definitely do intensive PT and repositioning. S's head started off worse but his torticollis was easily corrected while J'

nuttycoconut

I just answered this on 6-9 months for another person so I will copy some of my answer here.

We have been watching the plagio since 1-2 months old. I tried tons of tummy time, repositioning while sleeping, putting a washcloth/blanket in the car seat or swing to turn their heads, feeding on different sides, supervised tummy naps (they hated it), wearing them, Bumbos, exersaucer, etc. I did see some improvement but not enough. I worried about it constantly and tried everything I could think of but eventually at their 5 month appointment my pedi referred them to a cranial specialist. 

At the specialist tons of pics were taken of their heads and their features were analyzed for any misalignment. My DS had mild plagio and my DD was moderate. My twins have Doc Bands. We paid $5000 for both but didn't want to have any regrets about not doing it because you can never go back and fix it later on. After 1 week their heads looked SO much better. They have had them for 2 weeks and have adjusted very well. It's awesome to go to the weekly appointments and see the progress. I have no regrets whatsoever. 

The babies had no problems with sleeping and they were used to the bands after a few hours. In fact, it has helped them save their heads from some big bumps since they are becoming more mobile now. 

I was worried about how strangers would perceive them helmets in public but we painted them fun colors and got some decals that say "tinkering with a flat" and "rounding out my game". Many people still comment that they are cute, and some people even say that their baby had a helmet too!

Because we got them at 6 months (5 months adjusted age) they will only be in them for 8 weeks. As my pedi says, it's only a "blip on the time scale." The longer you wait the longer they are in them. Good luck with your decision!

krwact

Missa_g said:

How old is your DS? I'm on mobile and siggies don't show, sorry.

He's 3.5 months, 2 adjusted. Thank you for sharing your experience. It is a relief to hear positive experiences. @nuttycoconut, you mentioned the cost. Did insurance cover any of it? @Misaa_g, how about you?
What kind of a specialist did you see? I was surprised that our pedi referred us to a plastic surgeon. She's dealt with plagio before but she wouldn't be able to help with torticollis if he has it. I'm going to ask the pedi at our 4 month appt but I'm curious who you saw.
Thanks again for the responses!

nuttycoconut

We are still waiting to see about insurance. One mistake we made was that we didn't check to see if the cranial specialist we went to see was in network. We just went wherever the pedi referred us because the first visit was free and then we stuck with that place since they were checking on our insurance for us. So now we have been waiting for about a month. I am assuming they aren't paying but I'm planning to appeal. However a friend's insurance didn't pay but she was able to get the negotiated insurance rate which we won't be able to get since it's out of network.

krwact

That sounds like such a headache for you.  I'm sorry you have to maneuver through insurance bureaucracy.  FX they surprise you and approve it on the first go-round!